My beautiful Isla was born on 28th February 2015. After a stressful
emergency caesarean, I remember the nurse standing over me, handing me a bundle of towels. Amongst them was Isla! She was perfect in every way. We were so happy.
My wife, Steph, first noticed something wasn’t right with Isla when she was just two weeks old. She struggled getting over a simple cold and her breathing was funny. She was referred to the hospital who told us it was nothing to worry about. What a relief! However, by the time Isla was six weeks old, doctors noticed she was floppy for her age; she started going off her feeds, her weight dropped off and she was put on a feeding tube.
From then on, for every hurdle we overcame, there would be a new one. She started being sick in the middle of the night and choking. After more stays in hospital and more tests, we were told Isla had a muscular problem. The doctors didn’t know whether her condition was curable or life limiting. We literally had the wind knocked out of us. I remember taking Steph home just not believing it. How could she be that bad? Yes, she was a little behind, but making good progress. Once home from hospital, Isla began to roll on her side and even to her belly a few times. You have no idea how happy this made us – how proud we were of this simple milestone. We thought things were on the up.
But then came the letters and conversations with doctors – saying the tests for curable diseases were all negative – that her condition was more serious. Our world changed forever. Following another stay in hospital, we noticed Isla wasn’t rolling on her side as much, and she was getting exhausted from the effort. The physio confirmed our worst fears – Isla had stopped improving and started deteriorating.
Isla now hardly has the strength to lift her arms, let alone play with
anything. She catches infections days after being treated for one, and we have been told everything they are testing for now is life limiting and progressive. The doctors think its mitochondrial, which means other areas of her body will fail and her liver is starting to show the early signs already. Steph and I feel we don't have much longer with Isla and we’re just trying and treasure the moments where she is out of hospital and we can be together as a family.
However, despite everything, our girl kept on smiling, as does her big sister Lily. Their smiles are what keep us going. I know raising this money won’t change what’s happened to Isla.
On the 10th of August 2016 Isla fought her last battle at the Donna Louise trust. She slowly passed away in our arms, we watched our beautiful daughter take her last breath. I was lost. Everything i should be as a father to protect my children was out of my reach. We had to explain to Lily her little sister had now gone.
But we’re not the only family that this happens to, and the children’s ward at Walsall Manor have been so incredibly supportive over the last year, I want to give something back and raise some money for them.
So, together with a group of friends, in September, we’re going to climb the highest mountains in England, Scotland and Wales, on a crazy bid to raise thousands of pounds.
Steph and I are incredibly lucky to have the support of so many friends and family – every single day, we are touched by how kind people are to us. Everyone asks what they can do, but apart from working a miracle, there’s not really much anyone can do.
However, there is one thing we can ask - please, if you can, support me by sponsoring me and helping the amazing children’s ward at Walsall Manor. If you can’t afford to sponsor me yourself, perhaps you could help spread the word, or do some fundraising yourselves and donate it on this page. Even just a coffee morning or a cake sale at work raising a few pounds will help – every little makes a difference. All money raised will help revamp and decorate their multi sensory room, helping children like isla have the chance to play in hospital too.